MEDICAL

Adult Health Toolkit

NEW RESOURCE FOR ADULTS WITH OI Check out the new resource from our friends in the USA, which in our opinion must be the best thing since sliced bread: “The Adult Health Toolkit” made by the Osteogenesis Imperfecta Foundation is: “Information for Adults Living with OI, Their Families, and Medical Professionals” to help you navigate…

READ MORE
Advertising image - what is the toolbox on pain and what should be in it?EDUCATIONAL

Toolbox on pain and OI

In March 2023 OIFE started the work of creating a toolbox on pain and osteogenesis imperfecta.  The aim of the toolbox is to enable people with OI to learn more about pain management. It will also include information and tips which you can discuss with your care provider when communicating around pain. What would YOU…

READ MORE
OIFE

New Pain and OI survey – Deadline April 1

The OI Foundation and the OIFE have partnered on a new project investigating the experience of pain for people with OI. The following survey investigates the experience of pain for people with OI. This survey is for anyone 18 years old or older and was written with input from OI experts from North America and…

READ MORE
Flyer announcing the OI2022 conference in Sheffield, UKEVENTS

Travel Grant for OI2022

Osteogenesis Imperfecta Federation Europe (OIFE), The Osteogenesis Imperfecta Foundation and The Brittle Bone Society (UK & Ireland) are offering a travel grant for the OI2022 conference in Sheffield, UK which takes place from Aug 30th – Sep 2nd 2022.  Healthcare professionals and researchers working in a low or middle-income country can apply to come to…

READ MORE
OIFE

We did it together!

The Impact Survey is now closed! We are very happy to announce that with the tremendous help of organizations and individuals around the world, we reached our ambitious goal of more than 2200 responses from 66 countries! More details to come. Thank you to the Osteogenesis Imperfecta Foundation, to Wickenstones and Mereo Biopharma for support…

READ MORE
Logo Brittle Bone SocietyCONFERENCES

How to fill the knowledge gaps in OI

On September 4th the Brittle Bone Society had their annual conference online. OIFE was represented by Ingunn Westerheim, who gave a talk together with Dr Laura Tosi and Tracy Hart from the Osteogenesis Imperfecta Foundation on how we can fill the many knowledge gaps we have in OI. The talk tried to explain how people…

READ MORE
MEDICAL

OI-registries in the USA

In OIFE Magazine 2-2021 we published an interview with Brendan Lee, M.D. Ph.D., Baylor College of Medicine, Houston, Texas about OI-registries in the USA. In Europe we are developing the EuRR-Bone – which OI-registries do you have in the US? There is a contact registry with ca 2500 individuals signed up, which is sponsored by the…

READ MORE
Dr. Brendan LeeRESEARCH

Fresolimumab – a potential therapy for OI

In OIFE Magazine 2-2021 we published an interview with Brendan Lee, M.D. Ph.D., Baylor College of Medicine, Houston, Texas about research on the potential therapy Fresolimumab (TGFb). Who are you and what is your relationship to OI? I am a pediatrician and clinical geneticist who has engaged in basic, translational, and clinical research in skeletal…

READ MORE
EDITORIALS

More than just a survey!

We know you hate surveys. We truly do. Every time you buy an object, order take away, online grocery or come home from a holiday, you get a survey. Are you happy? Unhappy? Do you have something to complain about? Would you like to recommend our app? Do a review? Please, please, please provide us…

READ MORE
Translate »